Fibromyagia

Firefly123 · December 2018

Hi for 4 months now I can't lift my arms as well as the chronic pain I can't seem to find any mention of this connected to fibromyagia as I've only recently been diagnosed and this pain has taken over my life. Im wondering has anyone else experienced this. I went from being a carer to 3 young adults to not even being able to dress/undress myself.
Thanks

poppy123456 · December 2018

Fibro affects people in many different ways. It affects me all over my body, from not being able to lift my legs, to raising my arms on most days. Even my ankles hurt badly by mid afternoon. I also have other conditions too, which makes it even worse.

I do believe though that once you've been diagnosed it's more psychological than anything else. In your head you've been diagnosed and it's constantly on your mind but realistically you're most likely no worse than you were before you were diagnosed.

I've had fibro for more than 10 years and was diagnosed several years ago. Tried all the medication you can think of, been to the pain clinic several times, hydrotherapy, everything. For me nothing works. You do learn to adapt and you get to know what you can and can't do. The things you struggle with etc. I always think to myself there's no point in moaning to people because there's nothing anyone can do. For me the worst time of the day is after 3pm and if i don't do what i want to do before this time then there's no chance after.

Finding what works for you is the only way to manage your daily tasks. Hot baths always help me. You'll manage because you have no other choice.

Firefly123 · December 2018

Yes I've had it for over 5 years they said going by my history just never lasted this long before maybe a few days.
I can understand what you mean by psychologicaly as the longer it's gone on the more worry and stress it's been causing. As I'm used to being so independent and having to ask my daughter to help me dress and undress is so frustrating.

I see a specialist tomorrow I guess to come up with a care plan my pharmacy will start giving me my meds in blister packs as I'm on so many for other health problems at the minute I'm marking an x on my hand sounds crazy but it's like my brain is asleep and I can't remember if I've taken them or not.

But yes your right we find ways of managing as there is no other choice.
[email protected]

Rachel55 · December 2018

Hi, I am recently diagnosed and I have this, there isn't a mention of this in the symptoms only elbow pain.

Firefly123 · December 2018

Well I saw the specialist today she said I also have osteoarthritis and frozen shoulders and something else as well as all my other health problems.

So I guess it's about learning that I can't do what I used to and start finding ways to manage what I can do

Hollypop · December 2018

My pain started in my arms years ago, my doctor put it down to my depression. He put everything after that down to my depression until I saw a specialist who diagnosed fibromyalgia. In a way the diagnosis was a relief because I knew my pain wasn't all in my head, I could hardly move some days and was constantly worn out. Ive been to pain clinics, had physio, steroid injections none of which helped. My pain is worse in my hips and legs now, then my arms. I am trying to learn to pace myself though I'm rubbish at it! Also having to retire at 55 through ill health it seems, work are trying to write me off which is probably for the best as I cant do my job anymore.

Firefly123 · December 2018

Yes it took me years also to get names for my pains. Had scans today and had more steroid injections so fingers crossed they help. Yes I need to listen more to my body instead of what I have to do

Alwaysone · December 2018

Hi @Firefly123 I've just been dxd with Fibro - I have Lupus/MCTD but this muscle ache and fatigue is completely different - I have help 3 times a week which includes washing and drying my hair. I can do it on a good day but even then it's at the expense of some thing else.Pegging out the washing is like a day trip to a theme park! It's real and, I believe, it's your body saying you need rest or healing x

Firefly123 · December 2018

Yes it's not easy at all.this has to be the worse I've ever been a long hot bath gives temporary relief.i was looking for scissors earlier I could not think of the name was very frustrating

traceydenisej · December 2018

I woke up nearly 9 years ago a d couldn't move from the neck down it was so scary for me as a single mother the doctor came out after 3 hours but I couldn't move anything till about 7 hours later they sent me for an mri scan to see if I had a stroke but hadn't only got diagnosed 7 years ago I still struggle daily but the docs said I could be in a wheelchair between 5-10 years so next Feb is 9 years and so far I just carry on as a single mum I have too they meds don't work and neither does therapy, just a little daily walk But any suggestions are welcome

debbiedo49 · December 2018

I can empathise with most of the above and find from being on here people are affected in lots of different ways. I find drying my hair to be way too much effort and was wondering what have other folks tried in terms of aids hints to dry your hair. I usually just tie it back damp. It's a big effort to dry it even when it's short. So I grew it out to tie back. I'm thinking of something that attaches to a hairdryer that I can put on my head if that makes any sense lol? I have shocking stiffness in my neck and shoulders which is probably undiagnosed arthritis or similar but get nowhere with my g p just pain meds.

hearsay68 · December 2018

Debbie, you can get a stand to put your hairdryer on. That way you don’t have to hold it and can either move your head or use alternate arms to brush or fingers.

Milly123 · December 2018

Debbie, back in the day, they used to have hairdryers with a hat (a bit like a shower cap) with a hose attached to it from a hairdryer. Don't know if they still make them like that or not. It would solve your problem of having to hold a hand held hairdryer.

debbiedo49 · January 2019

Thanks both suggestions are great

cherbie · March 2019

I also am newly diagnosed with this officially last year but likely had it last 12 years or so. I'm also new to this group so apologies if I'm posting incorrectly. I too just feel like this latest flare up is lasting so much longer than any of the others just feel so worn out. Would love the relief of a hot bath but my landlord is taking over 5 weeks and still not budging about getting somronr to look at my boiler so no not water XX genylg hugs to everyone

mdam · March 2019

Hi I am new to group. Diagnosed with fibromyalgia in 2008. Before that myalgic encephalomyelitis since 1997. Also lots of other medical problems. Regarding the fibromyalgia my arms were always the worse especially my left arm. I have got worse over the years and had to be retired at 55 years old. Rather than have relapses I am now in a permanent very poor health and no longer have good days or good periods. Every day is a very painful not being able to do anything. Luckily I have supportive family and get pip. My GP tries to help but is reluctant to refer me to a pain clinic as he thinks he knows best.

Emmach75 · March 2019

I was diagnosed with depression 18 months ago and 8 months ago I realised something else wasn’t right and have been diagnosed with fibromyalgia and possible rheumatoid arthritis. I feel like my life has been taken over and I’m losing more and more each day. I’m also a carer for my 2 ASD and adhd sons as well as another son and step children who have other conditions . I’m constantly in pain or very down. I have a supportive fiancé bit I worry it’s too much for him. He has Aspergers himself and he can be a bit hard to live with sometimes as he’s so black and white over everything. I don’t know quite what I’m posting this for

mdam · March 2019

Hi Emmach75. Has your Gp offered you pain relief and other medications such as gabapentine to help with the fibromyalgia. It won't help with the weakness or tiredness but take away some of the aches

Emmach75 · March 2019

Yes im on Gabapentin atm bit a low dose. I have to go back next week for a review. It’s not going much but I’m on zapain also.

mdam · March 2019

Good. I am glad you have some medication. Over time you can keep increasing gabapentine under GP guidance. The increased dosage definitely helps with my finger tip numbness and stinging nettle pain over my feet and shoulders. Take care and good luck with review.

debbiedo49 · March 2019

I’ve just started a new anti depressant supposed to help fibromyalgia the name escapes me right now. Fibro fog lol. I’m on Gabapentin and I’ve been having more flare ups due to pain from an ongoing muscle spasm in my left shoulder and neck past 5 weeks. I decided to go online and do some research on meds for fibro and made a doctors appointment finally after putting it off and off. Like I do. So turns out I got a new g p and she was really helpful and also told me to book in for steroid injections. Unfortunately only one doctor does them and he has been on holiday for two weeks. The flare ups and extra pain I’ve had have been worst ever and it can really get me down but I just have to keep moving forward sometimes one minute at a time sometimes one day at a time. I find sleep deprivation through being in pain really affects my ability to cope day to day and getting a good sleep is top of my list. I’ve never taken meds for sleep and I’m wary because in the past some anti depressants have made me groggy the next day. Does anyone take sleep meds? I also take hemp oil just to try to help which I think it does. I feel less well when I stop it. Keep thinking about cbd oil but it is expensive. I know you can vape it now. I don’t vape or smoke but would try anything when it’s this bad. Hi to any new members and posters. We are pain warriors. X

mdam · March 2019

Hi debbiedo49.
I agree we are pain warriors. Keep going and I hope the injection helps when you get it .I have had difficulty sleeping . I am seeing a different GP who is trying new medication. I am being weaned of citalopram and starting a new antidepressant which helps you sleep it is called Mirtazapine. I have only took a few so far and sleep is definitely better. But have been very groggy in day time. I think this will get better given time.
Take care and good luck.

ClaireSaul · March 2019

Hi @Emmach75, @mdam & @debbiedo49
Just catching up with you all - having had a pretty horrendous pain week myself! It is so great to see the support that groups like this can offer each other and I hope that you will find this, Emma.
I take pregabalin - similar to gabapentin - and have used for sleep amitryptilline and mirtazepine in the past, but the grogginess was a huge problem for me.
Finding a GP who is understanding makes such a huge difference - along with a pain clinic and some the pain courses where you can meet up with others.
Debbie - I am a non smoker but use a CBD vape with some success, particularly for spasms. The cartridges are quite pricey but my first has lasted me 8 months - although I guess I might not use it as much as others. I am also currently trialling a CBD liniment which is sprayed directly onto the skin.
Good to meet you all fellow pain warriors!
Claire

Emmach75 · March 2019

Thank you yes sometimes the pain is awful. I had mirtazapine for my first antidepressant but it made me so groggy 🥴 I couldn’t function or drive. I’m on citrapine now and it a bit better. X

debbiedo49 · March 2019

debbiedo49 · March 2019

I got my steroid injection last Friday. So far it’s not made much difference 😔

fenfisher · March 2019

Probably take 7 to 14 days before you feel the affect I have every 6 months

Firefly123 · March 2019

Hi everyone Been in agony the past few weeks. My doctor gave me codeine but they make me sick. Its so hard with an invisible illness as you look ok and really in so much pain you could scream. Having been going through a lot of stress which definitely makes the pain so much worse.

debbiedo49 · March 2019

@Firefly123 sorry to hear that. I’ve been bad too and you just think it can’t get worse then it does eh? I can’t take codeine either as it upsets my stomach to. I’ve been using heat wrap and ibuprofen and upped my Gabapentin and had a steroid injection which is all trial and error. Right now I’m looking at books on kindle about fibro esp around diet as I think certain ones can trigger inflammation so they say and it may be true. If I get any tips I will post them as I know we try anything to get less pain. It looks like my trusted cups of tea may need to go as dairy, sugar and sweeteners and caffeine can be triggers. I honestly live on tea lol. I am gonna try reducing the amount of tea I drink first replacing with herbal tea.
Make sure you look after yourself and go go to your g p x

Firefly123 · March 2019

Hi @debbiedo49 i also drink a lot of tea. Had steroid injections in both shoulders they did help for a while. Drives me crazy not being able to do simple things like take my jacket off. Any tips very much appreciated x

debbiedo49 · March 2019

Following

debbiedo49 · April 2019

My steroid injection hasn’t helped much.

Firefly123 · May 2019

Im hoping wiith the improvement of the weather my pain gets less as been rough for so long this time

Waylay · May 2019

Stress and "negative" feelings (depression, sadness, anger, etc.) can make most pain conditions worse - it's a biochemical thing, not just psychological. Lack of sleep does the same. "Positive" feelings do the opposite. Obviously when you're dealing with limitations to your daily function you're not going to be feeling happy! If you can reduce stress at all it'll help. If you're not sleeping, see if your doc can give you a few sleep meds? I find that really helps.

Maybe that'll help...

[Deleted User] · May 2019

@Firefly123 I know what you mean, I'm finding my hands and such have been pretty sore due to the cold!

One other thing, do you have any problems with your armpits?

debbiedo49 · May 2019

What's wrong with your armpits @WF2k? I get pains when my bra cuts in after a couple of hours just on edge of my armpits

[Deleted User] · May 2019

The left one has been painful for months, don't wear a bra very often, last time I went about the other arm pit she claimed it was probably a blocked sweat duct.

KayTessyman · May 2019

I hear from and read other peoples experiences and I am amazed - I was diagnosed with fibro & chronic fatigue by a rheumatologist in the hospital (referred to him due to swollen knuckles etc - saw him twice - initial appointment then the diagnosis appointment). Rheumatologist immediately discharged me back to my GPs care - I was(am) prescribed Gabapentin, started on a low dose and it was titrated up - taken off any/all prescription painkillers, given voltarol emulgel for the pain and pretty much left to get on with it. its been a couple of years now and I am just slowly getting worse.

In some ways I am better because I have learnt my limits, but in others it is just getting worse and worse. My mobility absolutely sucks, I am pretty much housebound and have been for the last year or so, as its too painful/exhausting to walk further than/longer than 5 minutes or so. It takes me almost 3x as long to get somewhere as it used to. I have a walking stick and have just purchased a rollator (walking frame thingy). I did ask my GP to be referred to physio/anyone who could help me with my mobility problems and hopefully suggest things to make it better. To which I was told 'we do not refer for this anymore'.

I was already on major antidepressants before this so they have not been increased at all, the only addition to my prescriptions has been the Gabapentin which I am now on 900mg 3x daily.

I envy everyone who has gotten further help and support from their healthcare providers. I have just literally been diagnosed, discharged and left to it! I am at a loss on what to do next. I was supposed to go for a blood test towards the end of March, but I have been unable to get there yet due to mobility and lack of money to get a taxi (its not far but have been put on universal credit so we are permanently skint).

Firefly123 · May 2019

Mostly my shoulders and hands are the worse making self care really painful. Been told i should get physio but when is amyones guess. The problem is invisible and im to calm about it even though i really could scream in pain.
A new thing ive been getting lately is my knees sticking and is very painful trying to straighting. My legs. Our burning in my feet like they are on fire.
Been waiting to get better but its been considerably worse for months now so im sort of accepting what i can and cant do.

debbiedo49 · May 2019

@Firefly123 I get all of that to varying degrees and I do think with the pain and debilitation of fibro something is going on that weakens the muscles. What annoys me is I have self referred to physio and they say we do not treat fibro. They do not have the knowledge. I'm asked what can they help me with, what one thing and I get 4 sessions including the assessment. So the other thing is that I am quite flexible, or was, for the tests they use as standard. So they say oh my you are strong or you are flexible when's every other area I am not. So their standard tests suck for fibro. For past 6 months I've hard horrendous neck and shoulder pain. I was told to go straight to physio. They said I had a muscle spasm and a complicated name for the muscle of the neckband shoulder. I was given no instructions or meds for pain apart from use heat pads or go swimming. Then I went back to gp who said steroid injections and increase pain meds. That's not working. Now I'm waiting around 2 months now for an appointment for an ultrasound on my shoulder. Which I'm not holding my breath for on the NHS. It's a disgrace. I know I'm ranting but if I could afford private health care I would definitely pay for it.

Firefly123 · May 2019

Oh i understand completely we all need to rant at times. i had the ultra sound and was told it was frozen shoulders and nothing they can do about it. Some day i might be able to use my arms properly. As im a carer for 3 young adults on the spectrum i kinda need my arms.
But yes i get them saying so what can i do for you well hopefully something seems they just say all is to do with the fibro or my latest diagnosis of osteoarthritis so should just suffer.

Adrian_Scope · May 2019

Hi @KayTessyman, I'm sorry to hear how abandoned you feel after your diagnosis. Have you been in touch with FMAUK for some support? They have a helpline you can contact on 0300 999 3333.
Also, while I don't know if you'd get it, have you thought about applying for PIP based on your reduced mobility? You can check out the descriptors here and see if you think any would apply.

Fibromyagia

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